World CML Day 2020: Today, together, more than ever. For a life without CML
Every 22nd September, the CML Advocates Network leads the World CML Day global awareness campaign. On this day, chronic myeloid leukemia (CML) patients across the globe come together to raise awareness about our needs to the general public, politicians, and medical professionals across the world.
Today, together, more than ever due to the COVID-19 pandemic, the CML patient advocates need to connect as a worldwide community through digital tools by developing online activities.
Two months ahead of 22nd September, today we launch the World CML Day campaign, encouraging CML patients and patient organisations, health care providers, collaborators and all CML friends to join the global movement under a powerful motto:
"Today, together, more than ever. For a life without CML"
EHA 2020 Congress: CML updates and tips to a virtual attendance
EHA25 VIRTUAL: 25th EHA Annual Congress: "Unfolding the future!”
Just a week left until the European Hematology Association's annual congress starts as a virtual meeting this year! We hope many patients of the hematology community and specifically CML patient advocates, will be attending this impressive meeting from June 11-21, 2020 that is going to be held online due to the COVID-19 global pandemic.
Facing new challenges to bring an online platform to attendees, EHA2020 is offering this year a program with new types of sessions and schedulings through "On-demand" and "Live sessions" such as plenary presentations, award lectures, the presidential symposium and Satellite Symposia and Updates-in-Hematology organized by pharmaceutical companies.
Read more to see what has been offered specifically for patient advocates, hematologists and other stakeholders at #EHA25Virtual this year:
Results of the TFR for CML patients' study published in Leukemia
Bern, Switzerland, 28th May 2020.
“The psychological well-being of CML patients should be a consideration of healthcare professionals and addressed at all stages of the treatment-free remission journey”
- CML Advocates Network, the global network connecting 125 CML patient organisations in 93 countries, has published a paper in the prestigious journal Leukemia, considered one of the leading journals in hematology and oncology.
- The study, the main author of which is Giora Sharf, himself a CML patient, has identified chronic myeloid leukemia (CML) patients’ unmet needs during the treatment-free remission (TFR) journey.
The results of the study published on the paper “Treatment-free remission in chronic myeloid leukemia: the patient perspective and areas of unmet needs" indicate that there are points in the TFR journey where patients do not always get all the advice, information or support they want around psychological issues and tyrosine kinase inhibitors (TKIs) withdrawal.
Welcome, ARCRare from Romania and HEMA from Macedonia!
We hereby proudly welcome two new member organisations in the CML Advocates Network:
Asociația Română de Cancere Rare/ Romanian Rare Cancers Association based in Romania and
HEMA-Association for support of patients and caregivers of Hematology diseases based in Macedonia.
The CML Advocates Network now counts a total of 125 member organisations in 93 countries worldwide! See the list of CML groups in the Network on our world map.
CML and COVID-19: New Website section on cmladvocates.net
The CML Advocates Network is closely monitoring the current COVID-19 outbreak worldwide.
We are happy to announce the launch of a new website section to better inform the CML patient advocacy community on what is happening around Chronic Myeloid Leukemia and COVID-19 globally.
In this section, we will regularly publish breaking news, scientific information and other support resources which may be of interest.
Advance your knowledge on the CML and COVID-19 global situation with access to the following topics:
CML Horizons 2020 conference moves to November 2020
In light of the circumstances surrounding the global COVID-19 outbreak, the CML Advocates Network Steering Committee met via video-conference on March 19 to decide on the future of our annual CML Horizons conference which was due to take place in San José, Costa Rica from May 1-3.
Given the health risks posed to patients as well as the current travel restrictions for which there is no firm indication as to how long they may continue, the Steering Committee has decided to cancel the Costa-Rica CML Horizons conference and to re-schedule the event, circumstances permitting, in Europe in November 2020.
Even though it has been a difficult decision, the health of conference delegates remains our priority. We will continue to closely monitor the global situation and incorporate WHO recommendations on safety and travel into our sources of advice.
We will confirm the new dates, venue and further details about the conference in the coming days.
We would also like to express our sincere gratitude to all CML patient advocates, doctors, service providers and volunteers who have helped us with the organisation and program planning for Horizons 2020 Costa Rica.
Our commitment now is to work hard to reschedule and prepare an excellent CML Horizons conference for which we intend to exceed the expectations of conference attendees as they continue to learn, share and grow all together.
Stay tuned and follow our social media channels for more information!
